Reata Pharmaceuticals has a marvelous new drug that reduces oxidative stress and helps cells survive. Initially there was concern the drug did not meet it's primary goal, but closer examination showed there was benefit in some patients so the drug is moving to a Phase III trial:
As with the drug, Vatiquinone, this drug does not act on the underlying cause of Friedreich's Ataxia, but rather works by enhancing NrF2. The bad news is that means it's not a cure, but the good news is it probably could help other neurological disorders including most forms of ataxia. Here's the rub though, Omav will probably cost a small fortune while at the same time it appears there are excellent NrF2 activators that occur naturally, and they cost almost nothing.
as always, is Big Pharma comparing their man made drug to what nature has to offer for free? Why of course not.
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I'm not running out and buying Sulforaphane supplements, but I do eat a diet rich in cruciferous vegetables. In the end this just adds one more bit of info that makes me sadder and sadder each day. No one is really on our side trying to find real and affordable answers even though increasing research shows that Mother Nature may have a plethora of good candidates that can help people with ataxia.
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Bottom line: Eat broccoli every day or better yet broccoli sprouts; it might help and it sure won’t hurt
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Joe in NY
Written by
sunvox
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No I never mind questions. In fact I love questions
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No, I am not taking any medication. I was diagnosed in 2013 with SCA1 via a genetic test. I got tested because my father had a diagnosis of SCA1. He had symptoms including needing to use a walker and difficulty with speech and had been seeing neurologists for years with no diagnosis until finally one doctor with experience recognized the gait and speech as potential signs of ataxia. A genetic test confirmed my father's condition as SCA1 hence my desire to get tested as well.
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At first I did not recognize any symptoms in myself, but starting about 3 years ago, I realized I wasn't able to recover from my regular exercise routine like I once did, I was having to hold the handrail in the morning when I walked downstair, I couldn't balance on one foot whilst putting my pants on, I was always tired, I was finding clear alliteration more and more difficult if not impossible, and my hand writing was becoming increasingly unreadable.
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It hit me that I was experiencing early symptoms, and I was scared to death. I am the primary bread winner for my family, and I have 3 children in college. Now is NOT a time in life for me to medically retire. I became determined to find a way to slow my progression, and I started spending hours everyday scouring the internet for information and reading research that I found on PubMed. Early on I found another forum that is now defunct, but in that forum I found a discussion about trehalose dating back to 2007. It seems a handful of people with genetic forms of SCA had been eating trehalose daily and seen improvement in their condition. (Way back in 2004, researchers in Japan had cured mice with SCA1 by feeding them trehalose, but no one had ever tried it in humans.) Soon after on the same forum another poster brought to light a new form of vitamin B3 called Niagen. Unlike Niacin and Niacinamide, Niagen had no side effects at higher doses AND most importantly was known to enhance Sirt1 activation. Niacin and niacinamide inhibit Sirt1. Sirt 1 is critical to cellular health and is badly impacted in people with SCA. Within a few weeks of learning about these two supplements I began taking them daily, and I started my father and my aunt on the same routine. By the end of the first month of taking just those two supplements I was able to walk downstairs without holding the rail and put my pants on while standing on one leg. I still wasn't recovering fully from exercise, but I was able to build my speed back up which was something I hadn't done for years. (I have been a life long runner ever since I was 14 when I joined the high school cross country team.) Several months later I came across a scientific paper that was a report of a handful of patients with Alzheimer's disease that had reversed their symptoms and gone back to work. The heart of the author's research was that neurological disorders like Alzheimer's cause more than one problem in the brain so any treatment that is going to be successful must attack the disease from multiple angles. So far I was taking trehalose in an attempt to clean out toxic proteins from my brain and ingesting Niagen to enhance NAD+ production and activate Sirt1. In time I added Magnesium, Pterostilbene, Curcumin, Taurine, vitamin D, and EGCG because I believe each plays a slightly different role in helping my brain cope with the effects of ATXN-1 which is the toxic mutant protein produced by my genetic flaw. Important to all this is my dual belief that first of all you MUST attack illnesses like SCA from multiple angles and second of all the disease takes decades to manifest itself which to me means that the effects of ATXN-1 are tiny and so even though it is likely that only tiny, tiny amounts of each supplement are getting to my brain, they don't need to overcome a tidal wave of infection they simply need to slow down what is already a REALLY slow process.
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In the end, I believe that what I am doing could help many people, and in fact there are a dozen or so folks around the world following my ideas and even 2 doctors that have taken an interest, but I also think that it is the sum total of what I am doing that is allowing me to hold my symptoms at bay 100% right now. Perhaps someday science will catch up, and we will find that 1 or 2 items were not necessary, but for now I'm sticking to my total regimen.
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For the record here is what I am doing:
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1) Treadmill running 3 times a week for 30 minutes at 80% or more max heart (30 minutes at 5.7 mph and 0% incline) with 5 minute cool down walk (3.7 mph and 7% incline) plus additional weight training particularly leg lifts for my quadriceps and kettle ball dead lifts. I run this exact amount because it is precisely what was done in a scientific study of patients with Parkinson's. In that study only patients that achieved 80% of their max heart rate 3 times a week were able to halt progression of their disease. Patients who exercised at lower levels did NOT halt their progression. Also the study specifically used a treadmill, and there was one other study that used treadmills for patients with ataxia and that study also showed a benefit. In other words I believe running on a treadmill for 30 minutes at 80% max heart rate is important. Not cycling, not weight training, not dancing, but treadmill running or fast walking. I realize not everyone can do this, and I certainly believe that ANY form of exercise is better than no exercise, but there is a precise scientific reason for what I am doing, and I believe that is very important to understand.
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2) A diet mostly vegetarian with little or no dairy, processed food, sugar or meat and rich in cruciferous vegetables. Lots of oatmeal, egg white omelettes, salads, broccoli, spinach, Kale, brown rice, chicken breasts, and salmon.
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3) Supplements:
once a week .1 g powdered mannitol taken intranasally
daily squirt of Xylitol in each nostril
25 g trehalose AM in coffee
750 mg daily of Niagen (3 pills AM 3 pills PM)
2000 mg thiamine HCl (3 pills AM 1 pill in the afternoon) - (Solgar brand)
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